Almost four years ago, we were thrown into the world of Down syndrome, following the birth of our son, Liam. We had no idea that he was rocking an extra chromosome so we were completely shocked. As we struggled to digest the news, we quickly realized we were clueless, and completely unprepared for this new journey.
Instead of having a care plan set up prior to our son’s birth, we had to work fast once his diagnosis was confirmed when he was one month old. The multiple appointments were overwhelming enough, but we also found out that we had to set up early intervention as soon as possible. My husband and I felt lost, and didn’t have anybody to guide us along during the process.
Out of everything we had faced with Liam’s diagnosis, starting early intervention was the most daunting task. It was, essentially, our acceptance that our son had Down syndrome and that we would need help on this journey. Learning that we had to open up our home to strangers every week for three years was a harsh dose of reality.
When Liam started receiving services at two months old, it seemed like it was starting too early, and the three year process seemed so long. But the years passed by in the blink of an eye. Not only did Liam graduate from Early Intervention, but he also has a year of preschool behind him now. And saying goodbye to the therapists who were once strangers was the most difficult thing to do! You see, those strangers became a team of supporters whom we relied on, and grew to love!
Like everything else on this Down syndrome journey, everybody has a unique experience regarding early intervention. I learned so much during Liam’s 3 years in the Early Intervention program, and I’m hoping this guide filled with my favorite tips and therapy tools makes the experience just a bit easier for you!
What is Early Intervention?
First of all, what exactly IS early intervention? Although it varies from state to state, early intervention is a birth to age 3 program that provides services to children with developmental delays or disabilities during the early years. The therapist usually comes to you, and the amount of therapy depends on the evaluation and what is written in the IFSP (Individual Family Service Plan).
If you have a child who has Down syndrome, they will qualify. Although a medical professional may have already helped set up the program for you, you can also contact your county office for information.
TYPES OF THERAPY:
Developmental Therapy: DT is therapy that focuses on social/emotional skills, motor skills, language skills and conceptual skills. It is usually the first type of therapy your child will receive because it focuses on all areas of development, which tend to overlap during most of the first year.
Physical Therapy: PT focuses on gross motor skills. Your child’s therapist will work with your child to strengthen their muscles so they can reach milestones such as holding their head up, rolling over, sitting, standing, cruising, crawling, walking, climbing stairs, kicking and throwing balls, and jumping.
Occupational Therapy: OT focuses on fine motor skills, cognitive skills and daily life skills. In the early years, your child’s therapist will help your child learn how to hold toys, use their pincer grasp, stack blocks, and master simple puzzles, shape sorting, lacing, etc. As your child approaches the time when they will age out of Early Intervention, they will switch to preschool readiness skills such as holding crayons and putting on shoes and coats. Some occupational therapists can also help with feeding issues.
Speech Therapy: ST focuses on language skills and communication. Some speech therapists can also help with feeding, drinking and swallowing skills by teaching exercises that will help strengthen the muscles needed for those tasks.
Additional services that may be provided (contact your Early Intervention Coordinator or county office for more information):
Your child may receive just one type of therapy or every type of therapy. The type(s) of therapy that will be provided depends on your child’s evaluation, which occurs annually.
TIPS TO MAKE EARLY INTERVENTION (EI) A POSITIVE EXPERIENCE:
Set up a therapy zone.
Choose a comfortable and quiet location in your home and make it the designated therapy zone. A carpet or foam play mat on the floor provides extra comfort for your growing child. Store toys and therapy tools in that area for easy access. And if you’re extra ambitious, install a low balance bar and shatterproof mirror in that area! The bar is great for PT and the mirror can be used during ST.
Remember that you are in control.
This is the single most important thing to remember! If it doesn’t feel right, do something about it. You are in charge of your child’s therapy, so don’t be afraid to speak up if something isn’t working for you or for them. In order for Early Intervention to be a positive experience, everybody must be happy!
Don’t be afraid to ask for what your child needs.
You are the person who is with your child most often, so YOU are the expert! Forget the guidelines on when to start a particular type of therapy. You know what your child needs, so ask for it! Although your request may be initially declined, keep fighting!
Ask your therapist for toy recommendations.
Does your child have a birthday coming up? Ask your therapist! They will be able to steer you in the right direction, and give you age and developmentally appropriate suggestions!
If you feel the therapist isn’t a good fit for your child, request another one.
One of the biggest mistakes you can make during therapy is sticking with a therapist that isn’t a good fit. Before requesting a new one, you should at least talk to the therapist and give it a trial run before moving on.
Take a break if you need to.
It is 100% okay to take a break if you need to. Too much therapy can be exhausting. Your child is a child just like any other, and should be given time to be a kid. Taking a short break from therapy can be very refreshing!
Schedule therapy sessions according to your child’s schedule.
It might take some trial and error to find the perfect time to schedule your child’s therapy session(s). Schedule your session for about an hour after your child wakes up for the day or wakes up from a nap. They need to be alert, well fed and well rested!
Set up activity kits for your other children.
If you have other children, they will most likely be home during therapy sessions every so often (if not all the time). Jealousy is a common issue, and siblings can be very distracting. Putting together activity kits, which only come out during therapy sessions, is a great way to fix this issue!
Gather up a few plastic storage containers and fill them with fun items. Rotate through the boxes by giving them a different box at each session. Here are a few of the activity kits that I put together for my older kids:
Art Supplies - Coloring Books, Paper, Crayons
Cutting and Pasting Box - Safety Scissors, Paper, Scraps of Fabric, Ribbon, Magazines, Paper, Glue Sticks
Bracelet Making - String, Pipe Cleaners, Beads
Blocks and figures (animals, dinosaurs, people)
Foam Craft Kits (these can be purchased inexpensively at the dollar store)
And when all else fails, allow screen time during therapy sessions!
Don’t stress over the appearance of your home.
This is the most difficult thing to overcome! For over a year, I ran through my house cleaning it before therapy sessions. It HAD to be perfect. I finally realized that the therapists really didn’t care if there were dishes in my sink, dust on the bookshelves, or if the floor was completely spotless. They just wanted my son to thrive!
THE BEST THERAPY TOOLS FOR BIRTH-AGE 3:
When we first began therapy, Liam’s therapists arrived with their fun bag of therapy tools. Eventually, the state ruled that the therapists could no longer bring items with them. Instead, they had to use items within the home.
It really did make sense to use items that the child could continue to practice with outside of therapy, so I asked for recommendations from all of Liam’s therapists and did some research. I ended up filling our home with items that Liam could use with his therapists and beyond!
The first year
During the first year, all the therapy types seem to blend together. As the child approaches their first birthday, that’s when therapy starts to become specialized. There are only a few items that really come in handy during this time frame.
Tummy Time Pillow
Musical / Light Up toys
Black & White contrast toys and books
Boppy Pillow to help with sitting
Puffs to help teach pincer grasp
Touch and Feel Flashcards
First Words Books
Toys of all kinds to teach words/commands
Shapes from a shape sorter
Foam letters and numbers
Little People sets (great for labeling and pretend play)
Straw Cups (Sippy cups actually ENCOURAGE tongue thrust!)
Simple blocks for stacking
Chunky peg boards
Puzzles with knobs
Large crayons and coloring books
Aquadoodle, Magnadoodle or Gel doodling pad
Pop-Up tunnel to crawl through
Adjustable basketball hoop (encourages reaching)
Folding Slide (great for indoor play)
Ride on toy
Push toy for walking
Child-sized table for standing while playing
Wedge for crawling
Shopping cart or stroller for pushing
Small ball for catching and kicking
Water table (encourages standing)
Painter’s Tape - great for making a line on the floor to use as a “balance beam”
Pool Noodles - slice the pool noodle into 1 inch pieces and use them for lacing onto a piece of rope
Sponges - great for stacking
Pipe Cleaners and Colander - thread the pipe cleaners through the holes in the colander
Ice Cube Trays/Muffin Pans and Finger Foods - place the food in ice cube trays or muffin pans so your child can fine tune that pincer grasp while eating
Early Intervention played a big role in Liam’s life from the time he was two months old until he aged out of the program on his third birthday. The dedicated team of therapists gave my son the skills he needed to reach his milestones, and they became part of his story. It may seem daunting when you first begin, but those three years will fly by in the blink of an eye, and before you know it, you will be dropping your child off on their first day of preschool! And then, a whole new journey will begin...
Stefanie can be found blogging at Lexie Loo, Lily, Liam & Dylan Too, which is her parenting and lifestyle blog featuring her four kids. You can also keep up with her family through daily pictures on Facebook and Instagram.